living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

In mid-January 2016, I went in to the Johns Hopkins Hospital for an outpatient Interventional Radiology procedure, a liver biopsy. There were several spots scattered throughout my liver, showing up on scans and growing despite the antibiotics that would have cured them if they were just abscesses. My mother-in-law happened to be visiting when my biopsy was scheduled, so she and my husband, David, and I trudged through the confusing pre-procedure testing at the Outpatient Center, an odd building built like an airport terminal. When we finally got into the Interventional Radiology procedure area, David and I sat together and listened to the consenting doctor’s description of what they were about to do, without it quite sinking in.

Probably because I was slightly in shock at needing a biopsy, I hadn’t given much thought to what it would mean to biopsy the liver. If you just think about it, though, you realize how harrowing it is. They need to remove samples of tissue from within the organ, which is large but is nestled up under the right ribcage. This means that they essentially need to stab you with hollow needles, repeatedly in your right side, until they get enough tissue samples for a full biopsy. They use ultrasound to locate the right spots to stab, and I think they did some kind of cursory testing on the samples they removed elsewhere in the room, to make sure they were getting enough of the right tissue. If I remember correctly, they targeted two of the spots in my liver, one toward the front just under my lowest rib, and the other on my right side, a bit farther down my abdomen.

They gave me mild sedation to calm me down, but they certainly didn’t put me under. I think I even had to ask for local anesthetic, something the woman who scheduled my biopsy over the phone had recommended. I can’t imagine why they would ever do this without local anesthetic at the very least. At first it all seemed okay, as they positioned me halfway onto my left side, with my arms overhead, holding the stretcher railing or something. But I quickly realized it was not okay, and my terror and discomfort broke through the sedation.

I don’t remember a lot of the worst details, but I do remember clutching David’s hands as he stood by my head (this wasn’t only traumatic for one of us), whimpering with tears streaming down my cheeks, saying something like “no, no, no,” or “stop, stop!” Imagine being tricked into being stabbed by a team of medical professionals taking turns to reload their hollow needles, as everyone in the room pretends it’s perfectly normal. It was exactly that horrific.

Afterwards, my mother-in-law joined us in the recovery room, where I continued to cry and whine. I was having trouble breathing, with sharp pains shooting through my right side whenever I inhaled. The nurse told me they must have hit the bottom of my lung in the procedure. This seemed particularly nefarious, and I became even crankier. As I’m sure everyone else who’s undergone multiple medical procedures knows, it’s hard always to be proud of your behavior while under sedation or anesthesia. I know I was a real pill that day.

I recently had my second run-in with Interventional Radiology. I really try to give them the benefit of the doubt, but they are not my favorite branch of medicine. Admittedly, I think they must have horrible jobs, because they routinely stab sick people and wind catheters through their arteries and who knows what else. I guess somebody has got to do it.

For this recent procedure, my splenic artery embolization, they told me beforehand that they would use twilight sedation. This reassured me, because every time I have twilight sedation for endoscopic procedures, I fall asleep all at once and wake up later in recovery, with no memory of the procedure itself. Of course, with Interventional Radiology, things weren’t so smooth and comfy. I was calm and quiet in the procedure room as they situated me and hooked everything up. They positioned my left arm on a board sticking out from the side of the table, so they could access the artery in my wrist and travel down to my spleen. Around that point, I felt all ready for the sedation to kick in. They gave me the first round and I felt calmer, maybe slightly sleepy. But I certainly wasn’t going out. I think I might have said something then, or maybe it wasn’t until I felt them start to work on my wrist, which they’d already numbed with a topical anesthetic in the prep room. By the time I realized they had started and I was still awake, I spoke up, but with difficulty. It was like wading through mud to get the words to the front of my brain, then onto my tongue, then out of my mouth. And when I finally did say something like “When am I getting more sedation?” or “I’m not asleep yet,” I sounded ridiculously quiet, like my voice came from the bottom of a well. I think I cleared my throat and tried again. I remember speaking maybe three times, and I remember being acknowledged at least once, as someone in the room struggled to hear and understand me. But maybe I’m wrong about all of this. It’s such a fuzzy memory.

Eventually I did wake up in recovery, so they must have successfully knocked me out at some point. But again, I felt unreasonably cranky in recovery, annoyed beyond belief that I hadn’t gotten the nice, soft, cozy sedation I’d been hoping for. I wasn’t in a lot of pain yet, but my whole left arm hurt, and this made me incredibly frustrated. I complained and waited for more pain medicine, which finally did come. But unfortunately, it didn’t take long for me to discover that a Dilaudid PCA isn’t as great as it sounds. When it only dispenses 0.2mg every 10 minutes or 6 times per hour (and only when you press the button, so tough luck if you fall asleep for more than 10 minutes), it can take an hour and a half to build up enough of a dose for real pain relief. I spent the rest of that day and that night in the hospital sleeping fitfully and trying to get over my annoyance that I wasn’t getting hit with those glorious waves of Dilaudid candy fluff you get with a 1mg IV push. But I went home on Dilaudid pills, which worked so well (much better for me than Oxycodone) that I’m using exclusively Dilaudid now for my routine pain management (combined with Tylenol and Ibuprofen, but no other narcotics). Still, my experiences with Interventional Radiology have been less than stellar.

After the liver biopsy in January, It took at least several days before my pain eased and I could catch my breath. And during that time, I began to consider what it really meant that I had just had my liver biopsied. If it was cancer, it was probably pancreatic cancer, considering my medical history. And if it was pancreatic cancer in my liver, that was not good. I remembered Eve Ensler’s cancer memoir, In the Body of the World, which I had listened to on audiobook the previous summer. At one point shortly after her diagnosis with uterine cancer, she thinks, “I know about the liver. Once the liver goes, the whole story goes.” I kept thinking of this during that week in January, waiting to find out if there was cancer in my liver too.

Finally, four days after the biopsy, on Tuesday, January 19, my GI surgeon called me with the results late in the afternoon. I had gone to acupuncture that morning with my aunt, who visited to be my chauffeur and companion. That afternoon, the therapist I’d recently started seeing came to my house for a session (out of her own generosity, since I was dealing with so much pain and medication then that I wasn’t driving). After that session, I took a nap, listening to a guided meditation on my phone. When my phone rang, I awoke from a deep and confused sleep, answered my phone, and heard Dr. Hirose’s voice tinny and distant, as if through water. I was so out of it that it took a few moments for me to realize that my headphones were still plugged in. Once I figured that out and got on the line with him, it took another few moments for me to realize what he was saying. They had found adenocarcinoma in my liver, in multiple spots. It was malignant. It was cancer. He didn’t have any more information than that, but he had scheduled me an initial consultation with the Pancreas Multidisciplinary Cancer Clinic at Hopkins, part of the Sidney Kimmel Comprehensive Cancer Center, for the following Tuesday. That left me a week to absorb this news, while still waiting to find out what kind of cancer I had and how serious it was.

I don’t remember if I cried then. Eventually I got out of bed and went downstairs to find David. As I was coming down the stairs, someone knocked on the front door. I think it was one of those Verizon sales calls they make on blocks that are wired for Fios. It was something like that, something meaningless and intrusive, that I had to smile weirdly through until the person left a minute or two later. Then we closed the door and David sat back down and I turned to him, probably with a look of utter devastation on my face. I sat on the ottoman at his knees and said I had to tell him something. I barely got out the words “I have cancer” before I started crying, and we held each other and tried to understand our new lives.

Whole chunks of my life have been given over to narcotics. When I was first sick with pancreatitis as a child, I was so drugged for months on end that I basically remember none of it. Or I remember tiny sensory details, like the weird modern geometric pattern on the curtains in my rooms at Children’s Hospital in DC. I remember that because I would literally spend days lying in my hospital bed, tracing the pattern with my eyes through my drug haze, trying not to think about my pain or my fear or my guilt or my nausea. I also remember that I would get little sensations in the tips of my dry fingers, where the fingertips meet the nails, like a spontaneous tightening of the skin. Probably also because of the drugs, I thought this sensation meant that God was with me, in the room at that moment, that the skin tightening signaled a divine presence. Honestly, I just needed to latch onto whatever my crazed mind came up with to comfort me.

But I don’t remember conversations with doctors or nurses or the social worker whose visits brightened my days. I don’t remember a single other child from the hospital, although I know I used to play with them in the common rooms. I don’t remember any of my many surgeries or procedures, or the recoveries afterwards, which included such specific medical humiliations as NG tubes and incision staples. Of course, maybe no one really has specific memories from when they were nine years old. And maybe I wouldn’t have remembered this anyway if it had happened at a different time in my life. It’s just odd to me the insignificance of the things I do remember, the things that escaped my drug-induced fog. I remember the slippery tactile feeling of the balloons we kept, deflated and flattened, in my sort of scrapbook about my time in the hospital, but I don’t remember the people who gave them to me. Maybe I’m wrong, but I feel that the drugs are to blame.

Narcotics have been both the necessary evil and the saving grace of my medical saga. There is no way to survive acute or chronic pancreatitis, countless procedures and surgeries, or certainly pancreatic cancer, without painkillers. When they work, they’re the greatest relief you could possibly imagine. You take a pill or push a button on your PCA or get an IV push if you’re lucky, and slowly, your insides turn frothy and everything fuzzes until your edges are indistinct and your pain melts down into some inaccessible place you suddenly don’t worry about. It’s probably not gone, it’s just that you can’t reach it. There’s a buffer between you and the pain, like pillowy quilt batting. This cotton moat fuzzes its way into your brain too, until you forget to even think about your pain anymore. You might remember that there was something bad not that long ago, something that gave you a yucky feeling. But right now all you can get to on the inside is candy fluff and a low, gentle hum of complacency.

But when they don’t quite work, you’re left in the limbo of simultaneous pain and dissociation. When you don’t get enough or the drug isn’t a good fit for you, your pain is still there, persistent and obnoxious, but it’s harder to figure out how you feel about it and what to do about it. You’re left in some kind of suspended state, where you can’t lower yourself down into blissful oblivion, but you’re still far from clear reality. In those times, you hate narcotics, because they’re a tease, because they were supposed to make you feel better but somehow you just feel ickier, or angrier, or sadder.

Also, you inevitably have to deal with the side effects of narcotics, whether they work or not. After a while, the flip side of the coin comes to call and you have to pay up, maybe with constant itching, or with nausea and motion sickness, and certainly with constipation and digestive trouble. Then, the more you take, the more your insides get stopped up, the more your body slows down into something halfway like hibernation. The weird thing, though, is that narcotics actually raise your heart rate. When I’m on painkillers more than just occasionally, my pulse can rarely get below 100. So you’re pushed down into a dreamlike confusion of slowness and fuzzy edges, but your heart is working harder through it all. Really, they’re evil things, opioids.

This is why I’m seriously considering medical marijuana. It’s legal now in Maryland, and the last I heard, the oversight commission is reviewing applications for growers and dispensaries. So it’s not available yet, but it will be before too long. And if anyone ever qualifies for medical cannabis, it’s probably me, with pancreatic cancer pain, chemotherapy side effects, etc. etc. I don’t know much about medical cannabis, or the forms it’ll be available in, but I do have high hopes that it could help relieve my pain and nausea without causing the kinds of burdensome side effects that opioids cause. (It would be nice to have something to treat my pain that doesn’t also render my brain practically inactive, but maybe that’s too much to ask. Because of course, pain is all in the brain, so treating pain from any source requires targeting the brain.) If you know anything about medical cannabis, especially in Maryland, please share it here, for me and for others.